The CONNECT project has launched a new bilingual video that shares the perspectives and experiences of Autistic youth and adults, and their parents.
CONNECT was started by Dr. Caroline Jose, MSSU Research Associate, who recognized the need to engage and empower Autistic adults in research in order to understand their everyday needs and the challenges they face. Early on in the project, Dr. Jose invited Patricia George-Zwicker, Editor-in-Chief of Autistics Aloud, to join the project as a patient advisor and Co-Lead.
“CONNECT has come to take its name quite literally. We’ve connected data to lived experience, learned from our mistakes, and adapted to some extraordinary circumstances,” says Patricia George-Zwicker. “We’ve really shown the impact of first-person involvement in the trajectory of our life and future. CONNECT is a trailblazer when it comes to empowering Autistic people in positions that are not typically held by us, creating opportunities that don’t otherwise exist.”
Reflecting on the project’s development and the role of patient advisors, George-Zwicker explains, “Having an Autistic person as Co-Lead allowed for a perspective that truly impacted every aspect of this project. I was able to open up the surveys to those not formally diagnosed as well, which only added to our research.”
“Having other Autistic people actively involved throughout the project had an impact and helped inform our approach. We’ve taken our data and truly created an empathetic element that research doesn’t always take into consideration,” adds George-Zwicker.
This commitment to inclusion is reflected in the video project too. The video was made possible by a knowledge-translation grant from the Consortium national de formation en santé (CNFS) through funding from Health Canada, and was produced in collaboration with Spectrum Productions, a Montreal-based production company that creates opportunities for Autistic people who would like to work in media and the arts.
Working with Spectrum Productions was a natural fit for the project, and an opportunity to further engage Autistic people in making the video. “This video not only shares the expressions of Autistics on camera, but also reflects these perspectives behind the scenes. Several members of the production team are on the Autism Spectrum. It was an absolute delight to work with them and they provided an experience we wouldn’t have had elsewhere,” says George-Zwicker.
In an earlier interview about the production of the video, Dr. Jose highlighted the originality of both the project and the video: “CONNECT engages autistic adults, caregivers, and professionals who work with Autistic adults. This video amplifies their voices and shares their insights from more than two years of research.”
For George-Zwicker, making the video was an act of hope. “By creating this video and sharing it with anyone who has an interest in Autism, we are raising awareness about the gaps Autistic adults face. Hopefully, together, we can find ways to fill those gaps, so that all Autistic kids can achieve their dreams for the future.”